A New Transplant Frontier: Intestines

By DENISE GRADY

Published: October 31, 2000

Correction Appended

More than a year ago, doctors told John S. Williams that they had run out of ways to help him.

Mr. Williams, 41, the father of five children, had suffered since the age of 18 from Crohn's disease, an inflammatory disorder of the intestines. Repeated operations had removed so much of his small intestine that he could no longer absorb nutrients from food and needed intravenous feeding 16 hours a day.

Even that was not working. Mr. Williams, who is 5-foot-8 and a former construction worker in Branford, Conn., had gradually wasted away to 109 pounds from 150 pounds. And he had repeated infections from the intravenous lines.

''I was skin and bones,'' Mr. Williams said. ''As far as the doctors were concerned, I had one foot in the grave.'' They gave him about a year.

As a last resort, his doctor handed him a letter describing an experimental operation, intestinal transplant, being performed at Mount Sinai Hospital in Manhattan.

Last October, he received a transplant from a cadaver. Today, Mr. Williams weighs 170 pounds. For the first time in years, he can actually share dinner with his family. He eats fruits, salads and even pepperoni, foods that had long been forbidden. He hopes to return to work.

''I'm healthy again,'' Mr. Williams said. ''Every day I thank God.''

On Oct. 4, the surgery that saved Mr. Williams was approved by the federal Medicare program, which will now pay for it at certain hospitals, a step that removes the ''experimental'' label and will help make the procedure available to more patients, since private health insurers and state Medicaid programs usually follow Medicare's lead.

Transplants of just the intestine, or of the intestine along with other organs, including the liver, stomach and pancreas, will be allowed. Medicare already covers transplants of the kidneys, liver, lungs, heart and pancreas, and many people who need transplants are covered by Medicare even if they are under 65, because they are on disability.

An intestinal transplant costs $300,000, largely because it requires a long hospital stay, one to two months or more. But proponents say it should pay for itself within two years, because the intravenous feeding that it is meant to replace, called total parenteral nutrition or T.P.N., costs $150,000 a year per patient. Doctors also say the cost of the surgery should fall as centers gain experience and can safely send patients home sooner.

Only about 300 Americans have had intestinal transplants, but doctors estimate that 13,000 would be eligible under the new guidelines: children, and young and middle-age adults who have lost intestinal function because of disease, injury or abnormalities at birth, and who cannot survive even with intravenous feeding. So far, two-thirds of the recipients have been children. The number of patients is expected to grow by 10 percent a year.

''A year ago, nobody believed me, but I think transplant is going to be the standard of care,'' said Dr. Kareem Abu-Elmagd, director of intestinal transplantation at the University of Pittsburgh Medical Center, where 150 patients have had the operation in the last 10 years.

It was Dr. Abu-Elmagd's appeal to the government last year that led to the approval by Medicare.

Dr. Thomas Fishbein, the chief of intestinal transplantation at Mount Sinai and the doctor who performed the surgery on Mr. Williams, agreed that the operation was poised to take off. ''Patients are suddenly pouring in,'' Dr. Fishbein said. ''We're getting e-mails every day about somebody here or there across the country with some unusual problem.'' He said Mount Sinai had done 25 transplants in the past three years, and now had 15 to 20 patients waiting for organs, about two-thirds of them babies or small children. Some need combined transplants of both intestine and liver.

Children need donors of their own height and weight, and doctors say that the intestine, like the liver, has a remarkable ability to regenerate and will grow along with the patient.

The new Medicare rules say intestinal transplants will be covered only at hospitals doing at least 10 a year, with at least 65 percent of the patients surviving a year or more. Only four medical centers in the United States meet Medicare's requirements: the University of Pittsburgh, the University of Miami, the University of Nebraska in Omaha and Mount Sinai.

Dr. Abu-Elmagd said that at those centers, 65 percent of patients lived five years or more. He said the longest-lived recipient so far had recently celebrated a 10-year anniversary and was ''doing beautifully.''

Dr. Fishbein said: ''It's not really a cure. It doesn't return you to normal. But there is no alternative, other than doing nothing and letting a patient die.'' He said patients would need antirejection drugs and monthly blood tests for life, and even after five to seven years could still have chronic rejection or even need a second transplant.

The new Medicare rules say that transplants will be covered only for patients with irreversible intestinal failure and life-threatening complications from T.P.N., which include liver failure, blood clots in major veins, frequent or severe infections from intravenous lines or frequent episodes of severe dehydration. T.P.N. causes liver failure in about 20 percent of adults and 40 percent of children, though doctors do not fully understand why. But when it occurs, patients need both intestine and liver transplants.

Correction: November 13, 2000, Monday A picture caption in Science Times on Oct. 31 with an article about intestinal transplants referred incorrectly to a baby awaiting a transplant. The baby, Jariah Patterson, is a girl.